Thursday, June 24, 2010

We cradle together and fall down on our knees.

I interviewed my husband today for my thesis. I am not sure what I am going to use from the interview, but I thought some of his memories and viewpoints were very interesting and insightful. We've been a little estranged from one another for some time now, though we're working hard on getting it all right.

Marriage is not easy. I envy people who make it look to be so, though I sometimes wonder the level of their intimacy and honesty with one another when it does seem so effortless. I wonder sometimes if I'm just not getting it right, making things harder than they need to be.

Anyway, here are some high lights from the interview. I was trying to type as he spoke, so every now and again I could not keep up and ended up paraphrasing, but for the most part, these are our exact words. Some of my questions are left out though maybe they will seem obvious. I just could not type fast enough to add my own words in so I assumed I would remember what I asked.

Gregg interview 6–24–10

Do you remember when I told you I had CF?

I remember the weekend we went my brother’s at the lake and you told me. I remember I did not know what it was. Had no idea what it was.
Didn’t know anything about it until you started explaining it to me. (I don't remember telling him atthe lake, I remember teeling him on th ephone in the kitchen at the duplex I lived in at that time)

What did you think after I explained?

I didn’t really start thinking about it until you started on your machine and stuff

That was after Marlee was born

I know

You didn’t notice me coughing?

Yes, but I didn’t realize how far along. I just remember the stories of your dad getting you into swimming and sports as your treatment

What did you think when I coughed when we first met?

I thought you were laughing?

All those times?

No but at the onset of it

After getting the vest what did you think?

The things you had been talking about kinda, not hit home, but made it more “here it is” this is what it is and, "I have to do this as the treatment for what I have," you know, and it had to be a regime, you had to do it. I understood you had to do it.

Did it annoy you?

No not at all.

Did it scare you?

No I wouldn’t day that it scares me because I know you don’t have to be pushed to do it, if you had to be constantly reminded, that would make it more "do or die" but that is not your make-up. you know what you need to do and you don’t need to be necessarily pushed. Now running or any kinda exercize outside of that, it’s a little bit different, but I think you knew that all the years of not necessarily ignoring it, but not thinking it would not happen to you, reality set in for you too, you know, so you just kind of adopted it as a way of life.

Do you think differently when you hear me cough now than you did before?

Like eight years ago?
Your cough is different, you cough less at night.
We can’t wrestle around like we used to, we can’t grab-ass around

I feel like I can do more of that stuff now, because I actually do treatments now, but you don’t think so?

I agree you cough less. I used to be able to time it.
Well, I knew I know when you are going to stop coughing, I know when this is the last time she is going to have to clear it out and then she can relax because I can just tell by how you cough if you’re getting it up and out.
I’m not scared for you.

But I’m gonna die. nobody has "survived" CF or not died from it iunless, you know, they got hit by a car or had a transplant and it worked good like my uncle. But then you have Eva and Paul and all these other people over here

I’m not scared for you, I don’t feel , you know, it’s like that newspaper article I read about special needs kids like that little boy, I felt sorry for him because he will never have a functional life. you still have a functional life. I’ve never thought about your life being any different than it is today because I don’t want to think about that. it’s just not how I – you know, it’s not that it hasn’t crossed my mind, but that is not my everyday thinking. I know things will change for the worse, that thought is in my mind, but it’s not constantly rolling around in my head.
When you go on IVs, the first dose is all I think of, I get into the midset of: ok here we go, we have to get in the mindset and after that, it becaused normacly and I know what we have to do and what you expect from me. But I don’t worry about the next time you have to go on IVs.

I am just under the mindset of take it as it comes. I am better with reacting to something than preparing for something that is going to happen anyway.

Maybe at some point in this thing I am going to have to change the way I think about it, but I am not to that point yet. I am not at the point where I need to panic. there is a fine line between panic and concern and I am always concerned about how you are doing, but there is a fine line – like your mom, I mean, she means well, but I can’t think like that, it would drive me crazy. I couldn’t do my job and worry about the things that are going on. maybe I just don’t have the mental capacity to give as much attention as other people give to it and be able to handle all the other things that are going on, I don’t have the mental capacity…

I just prioritize and you are the most important.

I remember when I had to take Marlee and they were coming over with the vest…you were still nursing. she was little and you didn't want her here while you learned how to do it. I took her to the mall.

you did? the mall? I don't remember that.

I remember your first IVs, staying up until 2 in the morning the first night and you freaking out because we couldn’t get it started.

We had the pole

That was for the one, and the other one was the ball which you could carry around, but the one for the most part you sat in the kitchen and did it. and I remember all the hoses and shit.

Anyway, as I feel with this entire blog, this is probably more for my own fascination than anyone elses, but when he said he used to be able to time my coughing in knew when I would be done, for whatever reason that meant a lot to me, let me know he really has been present in all this, albeit silently quite often, but still, here.

Wednesday, June 9, 2010

win big, mama's fallen angel

Thesis work. I am posting for my own records, but also I'd love feedback. I need a draft by Aug and I am trying to get a good 20+ pages to my director before next week.

It wasn’t until sixth grade, my hair crimped, a black guns-n-roses t-shirt, when I reluctantly followed my mother for the last year to M Elementary school to meet my new teacher, that I remember becoming aware of what this meant. What CF meant for me. I smiled nicely at the teacher, checked the class lists to make sure my BFF Lo was in my class. But I felt something different in that meeting and so later that night I snuck the “A Child in your Classroom has Cystic Fibrosis” pamphlet from between the Salem menthol 100s and bottle of my enzymes in my mother's purse and crept into my room. I had never read that pamphelt or much else about Cf before that time
“CF is a genetic disease. It is the most common life-shortening disease among caucasions; people with CF are living longer than ever often into adulthood (age 18 and older). Thick sticky mucous builds up in the lungs leading to recurrent lung infections. Malabsorptions leads to poor growth, stomach cramping, and frequent, loose, foul smelling stools. Other complications such as liver problems, diabetes, and reproductive system effects can occur.”

How could I look at myself: a girl people often remarked as lovely and assimilate words like sticky mucous, foul stools? It wasn't those things. I was those things. I had all the issues listed, but I didn't want anyone to know. To associate me with those words.

Some little part of me died that day. The ignorant part. Maybe the girlie butterfly part, if I had ever had one (I was, after all, a girl with crimped hair in a guns-n-roses t-shirt). I’d already had a rebellious streak. I was already irritated with the doctors who said I should not have a cat, who said I might start my period later than my pers, the constant flu shots and breathing tests. The social workers who meant well but who spoke in such a maple sugar sweetness that I simply wanted to bite them.

But that moment, reading that pamphlet, I felt the hope of a normal life being sucked away from me and in that vacuum I grew talons from my hands rays of red sprouted from my eyes. CF would not take me. I would not be thick and sticky and foul. It wasn’t a war I was waging, it was an absolute obliteration of all expectations. It would be a disinigration of every word every written about Cf in relation to me. I would not be what they said. I would need nothing. CF was an earwig and I was a shoe. If I'd idolized the rock goddess heroines of my MTV youth before, now I would become one. I would be shiny, golden, cherry red lips, a girl who was beautiful and desirable and wild and who in her three minute moments of MTV glory would never cough or shit or be anything other than perfect.

I became, at that moment,twelve year old girl with CF who didn’t have CF.

all writing on this blog is copyright of Shannon North

Wednesday, June 2, 2010

I can't dance, I can't sing

I'm not sure what is going on.

My daughter caught a cold from the baby we babysit about two weeks ago. I caught the cold from her - somehow three year olds are great at coughing in your face and sneezing on your food.

Anyway, we both ended up on antibiotics: amoxicillian for her, cipro for me. I am also on my colistin month. I asked for three weeks of cipro. I also asked for a referral to get a port. I have the cipro, buy nary a word about the referral, though my clinic NP did say she thought it was a "great idea."

As seems par for the course when I get sick, I can't seem to exhale easily. It's the darndest thing. Air comes in OK but on the way out it is this wheezing darth vader ujjayi breath. and I'm tired. sooo effing tired. I don't think I am desatting just based on what people who do desat say about it, and I have not typically had trouble with my 02 sats....but I have no idea what my FEV1 is right now. I'd venture to guess it is back in the 50s since stairs have become a trial again. Who the hell knows, it's not like I can be seen when I am sick, my care is all over the telephone.

I've only been on the cipro not quite a week, so I want to give that a chance. Also, I tolerate colistin rather well, but this wheeziness is very reminiscent of how I feel on TOBI and I wonder if my already irritated lungs aren't liking the colistin as well as they usually do. I seem to feel better BEFORE I do it rather than after. I don't know. I'm bummed.

It is so tiring to not feel good. I forget about this when I am doing OK. There must be something different about this bout of illness though because my husband has been nothing but nice and helpful. Maybe it is because I held his hand to my chest the other night so he could feel the crackling and vibrating in there, or maybe just that he can see me pause while doing a simple task like unloading groceries to catch my breath and cough and cough and cough until it looks like vessels will burst on my head and my face turns rasberry and yet NOTHING wants to come up. bah.

I've been self medicating to make it through the day but I wonder if that isn't doing more harm than good...? It works for now.